AIDS Survivor Syndrome & Understanding the Linkages between Mental Health and HIV/AIDS

By: John Williamson, intern, ADAP Advocacy Association, and candidate for Masters in Social Work

In the early years of monotherapy treatment, a person living with HIV at the age of 20 had an additional life expectancy of 11.8 years (Gueler, A., Moser, A., Egger, M. et al., 2017). Gueler et al. (2017) reports that since the introduction of the combination antiretroviral treatment, that number has risen to a life expectancy of 54.9 years. As medical treatments continue to increase the survival rate among people living with HIV/AIDS, we must continue working to understand the psychological challenges the infection has on ones mental well being. We are often familiar with the physical and medical aspects associated with HIV/AIDS, however, the social and psychological factors are equally important as they can shape the experience of what it is like to be a person living with HIV (Roger, K., Mignone, J., & Kirkland, S., 2013).

According to HIV.gov (2019), people who are HIV positive are at an increased risk of developing an anxiety, cognitive or mood disorder, and depression. During a cross sectional survey in 2003 researchers found that more than 1 in 3 people who are living with an HIV infection have also been diagnosed with Major Depressive Disorder. While there is a significant amount of individuals who are diagnosed with a co-occurring mental health condition and HIV/AIDS fewer than one half of depression cases get recognized clinically in people with HIV (Asch, S., Kilbourne A., Gifford A., et al., 2003). Asch et al.,(2003) also found that individuals with a co-occurring mental health diagnosis of depression and an HIV infection only get treated 18% of the time for their depression, 7% get treated adequately, and only 5% achieve remission. This means that 82% of people who are dually diagnosed with HIV and depression do not receive treatment for their depression.

There are 1.6 million people in the United States living with HIV/AIDS with over half of them aged 50 or older and an expectation that  it will rise to 70% by 2020 (T.Anderson, 2016). Tez Anderson (seen below), Founder of Let’s Kick ASS, an AIDS Survivor Advocacy Group coined the term AIDS Survivor Syndrome (ASS) to describe the “spectrum of sustained trauma survivorship resulting from living through the AIDS pandemic.” People who are living with HIV/AIDS face a historically unique set of barriers including complicated bereavement, trauma, guilt, loss of relationships or community, and increased risk of depression, suicidality, and social withdrawal (Nord, 1996). One of the factors that distinguishes the trauma of someone living with HIV/AIDS from other tragedies or disasters, is the ongoing impact the infection has on a survivor, ultimately leading to further traumatization. Many people living with HIV/AIDS encounter losses that impact their sense of identity such as assumptions about life, future expectations, self-esteem, and security (Nord, 1997).

Photo Source: NBC's Today Show

Many long term survivors report differing beliefs about why they outlived their peers including the will to live, a healthy lifestyle, support from others, particular treatments, and clinical interventions such as psychotherapy (Sally, 1994). Researchers conducted an 8 site US study consisting of 803 people living with HIV and a co-occurring mental health condition and found that only 59% of individuals were receiving any mental health treatment (Weaver, Conover, Proescholdbell, Arno, Ang, Ettner, 2008). In the same study, Weaver et al. (2008) found that among their participants who were dually diagnosed with a mood disorder, only 40% of them were taking an antidepressant. People who are living with HIV are 2 to 3 times more likely to have depression and anxiety (Mascolini, 2016). Results from the US Women’s Interagency HIV Study (WIHS) (2005) found that women with chronic depressive symptoms had a 70% higher risk of AIDS related death than women with who expressed little to no symptoms of depression. WIHS (2005) also found that receiving mental health services halved the risk of AIDS related deaths in participants.

Through the integration of mental health into HIV/AIDS programs and initiatives, we have the opportunity to improve the overall health and outcomes of people living with HIV/AIDS. Direct care professionals are often not skilled in identifying symptoms of a mental health condition nor are they prepared to take action for referrals, management, or additional assessment. Training healthcare providers in the assessment and treatment of common mental health and substance use disorders as well as completing referrals to specialized services must be a part of the infrastructure of our healthcare system. By combining routine depression screening, provider training, proper supervision, and a closer relationship between mental health, substance use, and HIV/AIDS services we can work toward stabilizing the medical and physical symptoms while beginning to address the long term effects of living with HIV/AIDS.

Organizations such as Let’s Kick ASS, Elizabeth Taylor 50 Plus Network, and The Liberation Institute are taking a proactive step in providing services and research for long term survivors of HIV. Tez Anderson, founder of Let’s Kick ASS has led the way to understanding and treating ASS by working to increase research, dedicating June 5th as Long Term Survivors Awareness Day, and offering networking and wellness events in both Miami and New York as well as other cities. Elizabeth Taylor 50 Plus Network in San Francisco also offers support groups to both HIV positive and negative bisexual, gay, and transgender men over 50. They also offer weekly social events, health and wellness learning events, and community service projects. The Liberation Institute is another great example of organizations who are taking a stand for long term survivors of HIV/AIDS. They are a  not for profit mental health organization that offers psychotherapy, professional counseling, yoga, and meditation as well as other groups on a sliding scale basis.

Photo Source: POZ.com

While offering in person services is incredibly important, it is also important to increase as much access to support and information related to HIV/AIDS as possible. That’s why organizations such as the Well Project have created interactive online communities to increase awareness and access to support and information about HIV/AIDS. The Well Project is a not for profit organization that focuses on women and girls with the mission to change the course of the HIV/AIDS pandemic. They offer free online accounts where members can develop a profile and interact with other members through developing communities, joining/creating groups, sharing research/information, and connection to further in-person and online resources as well as group and private chats. Understanding the unique needs of the aging population living with HIV is crucial to developing effective treatments that will increase both life expectancy and overall well being.  HealthHIV has recently developed the Inaugural HealthHIV State of Aging and HIV Survey in order to assess the needs of people living with HIV/AIDS that are over 50 years of age. This survey will allow researchers to create informed medical and consumer education while also addressing the coordination of care for people living with HIV/AIDS.

For people who are HIV positive or are in need of testing or services, HIV.gov offers many tools to identify and connect you with providers and organizations within your zip code. You can find your state HIV/AIDS hotline, a toll free hotline connecting you with local agencies that can help identify what services you are eligible for and assist you in attaining them. HIV.gov also offers a link to the American Academy of HIV Medicines Referral list where one can search a directory of healthcare providers that specialize in HIV management and prevention while also identifying the different types of care settings.

According to the World Health Organization (2019) more than 70 million people have been infected with HIV since the beginning of the epidemic and about 35 million have died of HIV. The challenges surrounding HIV/AIDS are complex and they will take a unified effort to overcome. We can each play a part in the battle of HIV, whether that is by joining your local AIDS walk, participating in research such as the HealthHIV State of Aging and HIV survey, or joining community awareness and prevention projects.

References:

• Anderson, T. (2016). What is AIDS survivor syndrome? Retrieved: https://letskickass.hiv/what-is-aids-survivor-syndrome-dc0560e58ff0
• Asch SM, Kilbourne AM, Gifford AL, et al. (2003) Underdiagnosis of depression in HIV: Who are we missing? Journal of  General Internal Medicine. (18); 450-460
• Bacon, M., Viktor, W [...], and Mary A. Young. (2005)The women's interagency HIV Study (WIHS): An observational cohort brings clinical sciences to the bench. American Society for Microbiology, (9), 1013 - 1019
• Cook, J., Grey, D., Burke, J., et al. (2004). Depressive symptoms and AIDS related mortality among a multi site cohort of HIV positive women. American Journal of Public Health. (94) 1133 – 1140
• Gueler A, Moser A, Calmy A, Günthard H, Bernasconi E, Furrer H, Fux C, Battegay M, Cavassini M, Vernazza P, Zwahlen M, Egger M.(2017). Swiss HIV Cohort Study, Swiss National Cohort. Life expectancy in HIV-positive persons in Switzerland: Matched comparison with general population. US National Library of Medicine. 31(3):427-436. doi: 10.1097/QAD.0000000000001335
• HIV.GOV (2019). US Statistics: Fast facts. Retrieved: https://www.hiv.gov/hiv-basics/overview/data-and-trends/statistics
• Horberg MA, Silverberg MJ, Hurley LB, et al. (2008) Effects of depression and selective serotonin reuptake inhibitor use on adherence to highly active antiretroviral therapy and on clinical outcomes in HIV-infected patients. Journal of Acquired Immune Deficiency Syndrome.47, 384-390
• Mascolini, M. (2016). High depression rates with HIV and its scathing clinical impact. Retrieved: https://www.thebodypro.com/article/high-depression-rates-with-hiv--and-its-scathing-c
• Murrell , D. (2019). Facts about HIV: Life expectancy and long-term outlook. Retrieved:  https://www.healthline.com/health/hiv-aids/life-expectancy
• Nord, D. (1997). Threats to identity in survivors of multiple AIDS related losses. American Journal of Psychotherapy, 51 (3)
• Nord, D. (1996). Issues and implications in the counseling of survivors of multiple AIDS related loss. Death Studies. 20, 389 - 414
• Roger, K., Mignonette, J., & Kirkland, S. (2013). Social aspects of HIV/AIDS and Aging: A thematic review. Canadian Journal on Aging. 32 (3), 298 – 306 doi: 10.1017/S0714980813000330
• Sally, J.(1994). Psychosocial issues of AIDS long term survivors. Families in Society. 75, 6, 324
• Weaver, M., Conover, C., Proescholdbell, R., Arno, P., Ang, A., Ettner, S. (2008). Utilization of mental heath and substance abuse care for people living with HIV/AIDS, chronic mental illness, and substance abuse disorders. Journal of Acquired Immune Deficiency Syndrome. 447, 449 – 458
• Weber, R., Ruppik, M., Rickenbach, M., Spoerri, A., Furrer, H., Battegay, M., Cavassini, M., Calmy, A., Bernasconi, E., Schmid, P., Flepp, M., Kowalska, J., Ledergerber, B., et al. (2012) . Decreasing mortality and changing patterns of causes of death in the Swiss HIV Cohort Study. Retrieved: https://doi.org/10.1111/j.1468-1293.2012.01051.x
• World Health Organization. (2019). Global health observatory (GHO) data. Retrieved: https://www.who.int/gho/hiv/en/

Disclaimer: Guest blogs do not necessarily reflect the views of the ADAP Advocacy Association, but rather they provide a neutral platform whereby the author serves to promote open, honest discussion about public health-related issues and updates.

Implications of Co-Occurring Diagnosis of a Mental Condition and HIV/AIDS

By: John Williamson, intern, ADAP Advocacy Association, and candidate for Masters in Social Work

According to the National Institute of Mental Health, there are approximately 46.6 million adults in the United States who experience mental health conditions at any time in a given year (2017). People who live with mental health conditions are amongst the most vulnerable populations in our communities. In comparison to the general population, people with mental health conditions are at a higher risk for substance abuse disorders including IV drug use, homelessness, victimization, incarceration, engagement in “unsafe” sexual behaviors, and are more likely suffer from chronic medical conditions (J.Parks, 2006). In 2017, the National Alliance on Mental Illness in conjunction with the National Institute of Mental Health compiled the following data:

• Among 20.2 million adults in the United State who experienced substance abuse; about half of them (10.2 million) were diagnosed with a co-occurring mental illness.
• About 26% of homeless adults living in shelters live with a serious mental illness and 46% are living with a co-occurring serious mental illness and chemical addiction.
• Approximately 20% of state prisoners and 21% of local jail prisoners have a recent history of a mental health condition.
• People who are living with a serious mental illness die on average 25 years younger due to treatable medical conditions.
• Serious mental illness costs Americans $193.2 billion in lost earnings per year.

Photo Source: Patheos

People who are living with a mental health diagnosis have many challenges including symptom management, negotiating the disclosure of their diagnosis due to stigma, access to quality care, training, and education. For individuals who live with mental health conditions, these challenges are significant; yet, for those who have a co-occurring mental health condition and are HIV positive, these challenges can become more difficult to manage. The co-occurrence of a mental health condition and HIV is a public health issue that is important to discuss as it poses challenges for both those who have the diagnosis as well as the persons who are caring for and/or treating them.

Research has found considerable overlap between many mental health disorders and HIV infection. A multi site cross sectional study estimated that individuals who are receiving care for a mental health condition are four times as likely to be living with HIV as compared to the general population (M.Blank et al., 2014). The American Psychiatric Association and Office of HIV Psychiatry reported results from a study that found 19% of males involved in psychiatric care were HIV positive and of 320 patients between the ages of 20 and 40, AIDS was the leading cause of death (2012). In many cases, people with mental health difficulties are also diagnosed with a substance use disorder, amplifying the challenges of treatment and management of their mental and physical health (Parry, Blank, & Pithey, 2007). The Centers for Disease Control and Prevention found that approximately 1 in 10 new HIV diagnoses were due to IV drug users. Kidorf et al., (2004) conducted a study to identify co-morbidities in heroine users at a Baltimore needle exchange. The research found that over 50% of intravenous drug users had a co-occurring Axis I mental health diagnosis. Along with IV drug use, the abuse of illicit substances has also been linked to the increase risk of “unhealthy” sexual behaviors, both of which are cofactors in the risk of HIV transmission.

Access to care is a significant factor when understanding the comorbidity rates of mental illness and HIV infection. The National Alliance on Mental Illness found that only 41% of adults in the United States who have a mental health condition received mental health services in the past year. Of those who received care, African American and Hispanic Americans only received one half the rate of mental health services than that of Caucasian Americans. Individuals who have a mental illness are a largely disenfranchised and vulnerable population who are at a high risk of HIV infection. Research shows a relationship between serious mental illness and low socio-economic status (SES) as well as an increase risk of HIV transmission among lower SES persons due to the concentration of high risk populations (Parry, Blank, & Pithey, 2007). It is the recommendation of the United States Preventative Task Force, that all high-risk persons are tested for HIV at least annually. However, a recent study by found the following results:

• 6.7% of individuals receiving mental health services were tested for HIV infection. 
• Men were 32% less likely to be tested than women.
• Asian & Pacific Islanders were 53% less likely to be tested than white persons.
• African Americans were 82% more likely to be tested than other race groups (C.Mangurian et al., 2017)

For individuals with a prolonged serious mental condition, the risk of transmitting HIV is greatly increased due to symptoms such as impulsivity, affective instability, and exhibiting poor judgment (D.Moore et al., 2012). Therefore, symptoms can create obstacles to adherence such as disorganized thinking which can make it difficult to follow medical recommendations or paranoia, which could make one fearful of care providers or suspicios of medications. Due to factors such as depression, stress, and treatment adherence, which also hinder the immune system, people with serious mental conditions are associated with a more rapid progression of the HIV infection (Leserman, 2003).

Photo Source: Canadian AIDS Society

It is important for both providers who are treating patients with HIV and those treating patients with mental conditions to be aware of the potential co-morbidity amongst the populations. Through understanding the likelihood of a co-occurring disorder, a provider can be more prepared to partner with their patients and other providers in addressing both conditions and improving their potential for healthy outcomes. It is also important that providers are asking patients if they would like to be tested for HIV as both a concern for the individual and for public health. The research shows that people with mental conditions and HIV are at greater risk for negative outcomes; therefore, we must offer a greater quality of care for patients. Comprehensive care that requires providers to be attentive to both medical problems and mental health needs in order to address the public health concern that both pose.

References:

• Blank, M., Himelhoch, S., Balaji, A., Metzger, D., Dixon, L., Rose, C., Oraka, E., Davis-Vogel, A., Thompson, & Heffelfinger, J. (2014). A multisite study of the prevalence of HIV with rapid testing in mental health settings. Am J Public Health. DOI: 10.2105/AJPH.2013.3016
• Centers for Disease Control & Prevention, “Injection Drug Use and HIV Risk”, March 2019; Retrieved from https://www.cdc.gov/hiv/risk/idu.html
• Kidorf, M., Disney, E., King, V., Neufeld, K., Beilenson, P., Brooner, R. (2004). Prevalence of psychiatric and substance abuse disorders in opioid abusers in a community syringe exchange program. Drug Alcohol Dependency, 74, 115 - 122
• Leserman, J. (2003). HIV disease progression: Depression, stress, and possible mechanisms. Journal of the Society of Biological Psychiatry, 54 (3), 295 – 306
• Mangurian, C., Cournos , F., Schillinger, D., Vittinghoff, E., Creasman, J., Lee, B., Knapp, P., Fuentes-Afflick, E., & Dilley, J. (2017). Low rates of HIV testing among adults with severe mental illness receiving care in community mental health settings. Psychiatric Services, 68, 443-448
• Moore, D., Posada, C., Parikh, M., Arce, M., Vaida, F., Riggs, P., Gouaux, B., Ellis, R., Letendre, S., Grant, I., & Atkinson, J. (2012). HIV infected individuals with co-occurring bipolar disorder evidence pooor antiretroviral and psychiatric medication adherence. AIDS Behavior, 16 (8), 2257 – 2266 
• National Alliance on Mental Illness. (2019). Mental health by the numbers. Retrieved from https://www.nami.org/Learn-More/Mental-Health-By-the-Numbers
• National Institute of Mental Health. (2017) Mental Health Information. Retrieved from https://www.nimh.nih.gov/health/statistics/mental-illness.shtml
• Parks, J., Svendsen, D., Singer, P., Foti, M. (2006). Morbidity and mortality rates in people with serious mental illness. National Association of State Mental Health Program Directors. Retrieved from https://nasmhpd.org/sites/default/files/Mortality%20and%20Morbidity%20Final%20Report%208.18.08.pdf 
• Parry, C., Blank, M., & Pithey, A. (2007). Responding to the threat of HIV among persons with mental illness and substance abuse. Current Opinion in Psychiatry, 20, 235 – 241
• United States Preventative Services Task Force (2019). Human immunodeficiency Virus Infection: Screening. Retrieved from https://www.uspreventiveservicestaskforce.org/Page/Document/RecommendationStatementFinal/human-immunodeficiency-virus-hiv-infection-screening#consider

Disclaimer: Guest blogs do not necessarily reflect the views of the ADAP Advocacy Association, but rather they provide a neutral platform whereby the author serves to promote open, honest discussion about public health-related issues and updates.